Navigating Grief For People With Learning Disabilities
July 11, 2023
Grief is a universal emotion felt by most at some point in their lives. It can arise from many different human experiences, such as losing your job, separation, or death. Out of all human emotions, it can be argued that grief is one of the hardest to process. The scars it leaves on your life are felt for a long time. Sometimes, it can be so deep and painful that it can transform into Prolonged Grief Disorder, a condition that mirrors dissociation and depression, and symptoms are felt by 7 to 10% of bereaved adults.
While grief is life-changing and can impact our functioning for months or even years, PGD is a debilitating condition that is difficult to overcome. For the remaining 90% of people who do not experience PGD, grief is experienced as a transient emotion that slowly eases over time. The effects of grief are so notorious that the 7 stages of grief have become embedded in popular culture. It is often possible to notice the shift in a person’s behaviour as they move through different stages of grief. While it is heartbreaking to see, it also provides an idea of how to best support someone. Whether it is providing a shoulder to cry on when someone is depressed, or being there to listen to their bursts of anger and frustration.
However, not all people experience grief in the same way, as grief is a very individualised experience. It becomes even more challenging when the reason for your loss is ambiguous and confusing. Imagine someone close to you disappearing from your life forever without saying goodbye. You are unsure of where they went or whether you will ever see them again. All you have are the memories and photos from your time together. You begin to experience an emotion you have never fully realised before. And the already confusing world seemingly became scarier and lonelier overnight.
The experience of grief for a person with learning disabilities can be a very scary and confusing experience. Even more so than for a neurotypical person. That is not to say that all people with learning disabilities experience the world in the same way, but their experiences are unique to them and some of them may need additional support to understand the reason for their loss and how to process their grief.
In cases of death in the family, the denial of loss may persist for a long time. While the rest of the family have processed their grief and are trying to move on, a person with moderate to severe learning difficulties may still be looking for the bereaved family member. Prolonged searching and continuous hope for a person with learning difficulties may seem like a natural way to get the person back in their life, but it can open up old wounds for people around them. It is particularly heartbreaking to continuously explain and relive the death of a loved one for months or years. As is the continuous heartbreak people with learning difficulties experience when they are reminded that the person they lost is not coming back.
People with learning difficulties are not incapable of understanding loss and it is important to be honest with them about the difficult situation. They should not be sidelined as default in life-altering events. They are entitled to a choice about how they want to proceed. If they are going through their caregivers' divorce, they should be able to influence the care arrangements. If they are going through a death in the family, they should be consulted on whether they would like to attend the funeral. Depending on the cognitive limitations, they might not be able to articulate or fully understand the complete implications of their choices, but they should have all of the information and be involved as much as possible. It is important to listen and support them in coping mechanisms that work for them.
Part of the grieving process might be a lowered threshold for stress and activities that might have been manageable previously but are now a whole lot scarier. This can present as being overwhelmed in crowded places such as a train station, indoor activities such as going to the movies, or even overstimulation at home. There might also be an increase in behaviours that are repetitive and rigid, which can lead to further frustration if they are not able to carry them out. Some emotional cues will be missed as new stressors appear. The carer is going through grief as well so they might not be able to identify all potential stressors in advance, but this is not a reflection of their caring abilities. The most important thing in these situations is to be there for each other and find kindness if things do not go as planned.
Keeping to daily activities such as meeting with their support worker, attending classes or courses, and following their routine can be paramount to supporting them through such a difficult time. In cases of bereavement, memory lanyards could be a great tool for them to carry the memory of their loved one with them throughout the day. If they carry a smartphone or tablet with them, a dedicated photo gallery folder could also provide an accessible tool to quickly look at the person they miss. While at home, simple activities such as creating a memory box or photo collage could provide a good outlet for their emotions.
For more dedicated support in times of grief, loss and bereavement, Mindsum offers holistic mental health care for people with learning disabilities and their families. Our therapists are highly experienced in providing support for highly emotional life events for people with various backgrounds. You do not have to have PGD or any other mental health disorder to see our therapists. Everyone deserves support in times when it is needed the most.